Privacy Policy

This privacy policy sets out how argenx BV, Industriepark-Zwijnaarde 7 – 9052 Zwijnaarde (Gent) – Belgium, (“MG United”, “we”, “us”, or “our”) collects, uses, and discloses Personal Data that you give us or that we collect when you use our website at www.mg-united.eu the “Site”).

MG United is dedicated to providing people living with Myasthenia Gravis (“MG”) and those who care for them with general information and updates (newsletter) and/or carefully selected resources that try to address the unique ways MG can affect their life (“Services”). Wherever you are in your MG journey, MG United aims to help make today a better day. MG United website was created by argenx to support people living with MG and those who care for them by providing resources that try to address the unique ways MG can affect your life.

By using our Site, or by choosing to give us personal data, you consent to this Privacy Policy and the processing of your Personal Data it describes.

Please note that Site and the Services are for informational purposes only. You should consult your physician before you make any changes to your routine based on information on the Site or Services. You should not rely on information available on Site or Services, including information or material tailored specifically for you, as a substitute for professional medical advice, diagnosis, or treatment. If you have any concerns or questions about your health, you should always consult with a physician or other healthcare professional. Do not disregard, avoid, or delay obtaining medical or health related advice from your healthcare professional because of information available on the Site or Services. The use of information provided through the Site and Services is solely at your own risk.

Nothing stated or posted on the Site or Services is intended to be, and must not be taken to be, the practice of medicine or providing medical advice.

If you do not agree with any terms of this Privacy Policy, please exercise the choices we describe in this Policy, or do not use the Site or Services and do not give us any personal data.

MG United may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. Your continued access to and/or use of our website or services after any such changes constitutes your acceptance of, and agreement to this Privacy Policy, as revised.

Policy Summary

What Personal Data we collect. We collect personal data to provide our Site and Services. For example, if you provide it, we collect data such as your name, email address, and other information you provide about yourself, such as information about your experience with MG and your goals.
What we do with the Personal Data we collect. We use the information we collect to provide and improve our Site and Services and for the purposes we describe in this Policy. For example, if you sign up for our newsletter, we send information about MG updates, resources, MG-tips and more. If you sign up for a personalized experience, we send information based on your preferences and needs. If you choose to post your story, it may appear on a public part of our Site. We also use information you provide to respond to your questions, or better understand the needs and goals of the MG Community.
When we Disclose Personal Data. We may share information with third parties that help us provide our Services. For example, we may use a third party to host our website. If you ask us to publish your story, your story may appear on the Site, where it can be seen by other visitors. We may also share information if we enter a business transaction, to protect ourselves or others, or if required or permitted by law.
How we Collect Information using Technology. We use cookies and other technologies to collect information about how our Site is used and to display it better. For more information, please refer to our Cookie Policy.
Your Choices. If you receive messages from us, you may contact us to ask us not to send these to you. You may withdraw your consent to our use or disclosure of your Personal Data by sending your request to privacy@argenx.com. Please note that if you withdraw consent for processing of personal data that we need to process to provide our Services, we may not be able to provide those services to you. If you ask, we will remove your story from our Site. However, we cannot control whether other people shared your story already while it was on our Site, and we cannot ensure it is removed from the internet entirely. We are not responsible for this, so you should be careful when posting your story.

1. What Personal Data we Collect

“Personal Data” means any information relating to an identified or identifiable natural person such as an email address, or biographical and/or health-related information.

The Personal Data we may collect depends on how you choose to use our Site and Services. For example, we may collect the following information:

Name (your name may be provided to argenx of it is included as part of your email address)
Country of residence
Email address
Your gender or the gender of your loved one

● Type of relationship with a loved one living with MG [for caregiver only].

● Source of information: How a user heard about MG United.

Information you provide about your MG goals
Information that you submit by choosing specific subjects if interest

● Information you provide about your experience with MG. If you choose to include it, this may include information about your life, your biography, and your interests. Please only include information you are comfortable with sharing.

Other information such as your communications with us, surveys, and/or other information that you choose to provide to us.

Please note, you may only provide us with information regarding your MG experiences, not those of another person, unless you have that person’s consent to this privacy policy. For example, you should not provide information about your spouse or another relative, unless they have agreed that you can do so, and for their information to be used and disclosed as described in this Privacy Policy.

2. Sources and means of Personal Data Collection

In most cases we collect Personal Data directly from you. For example, we collect information when you provide it directly to our Site (e.g. by completing a form). You may only provide us with information about another person if you have their consent, even if you are related.

We also collect some technical information using tools such as ‘cookies’. This is described in Section 5 below.

3. What we do with the Personal Data we Collect

We use the information we collect to provide our Services. For example, we may use the information provided to the Site for the following non-exhaustive purposes:

To better understand the needs and goals of the MG Community.
If you sign up for our newsletter, we will use your first name and email to provide you with medical and scientific information and resources, such as MG updates, resources, MG-friendly recipes, ideas on how to track symptoms, stories about people living with and managing MG, seasonal tips and more.
If you choose to have this option, we will use your email address to send you emails that will be tailored to your interests and needs based on the information we collect about your preferences in relation to selected topics, areas, goals.
To publish your story if you submit it to a public area of the Site. Please note, once you post material online, it may not be possible to take it down, or to control who sees it. If you ask, we will remove your post from our Site. However, we cannot control who may have seen it before it was removed or what they may have done with it. For example, we cannot control whether information posted to the Site is re-posted, and we cannot remove information from third party sites. We are not responsible for this. Please only post information if you are comfortable with it appearing online, and understand it may not be possible to entirely remove it.
To allow you to take quizzes or complete surveys that may offer you tips or suggestions on MG-friendly activities, meals or other material that may interest you.
To improve our Services and the user experience on our platform.
To manage, administer, maintain, and service, the Site.
To respond to your questions or complaints.
To investigate and settle any dispute or claim which relates to our Site.
To investigate security breaches or cooperate with government authorities pursuant to a legal matter.
To comply with applicable laws and regulations.
For other purposes which are disclosed to you and to which you consent.

We may also anonymize, aggregate or otherwise strip any Personal Data or other information we collect of all personally identifying characteristics and may use or share that aggregated, anonymized data with third parties for any purpose we deem appropriate.

4. When we Disclose Personal Data

Users are not allowed to post on the website at this time. However, if you wish to share your story with the MG United community, please use the dedicated form to express your interest. In that case, your story will be posted publicly on the Site. Any information that you will choose to share with us to be posted will appear on the Site and may be seen by other visitors to the Site. Please only share information you are conformable with posting online.

We may also share your Personal Data with third parties that help us use your Personal Data for the purposes described in this Privacy Policy. For example, we share Personal Data with service providers that assist us with the activities described in this Privacy Policy, such as companies that help us run our Site.

We reserve the right to transfer any Personal Data we have in the event of bankruptcy, or if we or any part of our business merges with or is acquired by a third party, or if any such transaction is proposed.

We may also disclose Personal Data to third parties if we have reason to believe that disclosing such information is necessary to:

(i) conduct investigations of possible breaches of law;

(ii) identify, contact, or bring legal action against someone who may be violating an agreement they have with us; or

(iii) to protect our rights, safety or property, or those of others.

Finally, we may also share your Personal Data to comply with applicable laws and regulations, to respond to a subpoena, search warrant or other lawful request for information we receive, or to otherwise protect our rights.

5. How we use Cookies and Collect Information using Technology

A cookie is a small file which is placed on your computer or mobile device’s hard drive. Cookies and other technologies can help analyse web traffic or let us know what portions of our site people visit and what features they use. We may use cookies and other technologies to identify and keep track of, among other things, your Internet Protocol ("IP") address, operating system, browser type, username, the pages of the website or App that you visit, the time spent on those pages, access dates and times, clicks, links used, and actions you take on our Site, any errors you encounter, and general location derived from IP address.

We use cookies and other technologies to identify which portions of our Services are being used and how they are being used and to help ensure the Site displays correctly. They also help us analyse data about traffic on our Site, correct any errors our users encounter, and improve our Services so that they better meet user needs. We also use this information for statistical analysis purposes.

By using the Site you accept our use of cookies to improve your user experience, analyse site usage and assist in the improvement of our Services.

You can also choose to manage your cookies preferences via our Cookies Settings. You may accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the Services. For more information, please refer to our Cookie Policy.

6. Security

In order to help prevent unauthorised access or disclosure of personal information, we have put in place physical, electronic and managerial procedures to help safeguard and secure the Personal Data we collect.

Personal Data may be accessed by persons within our organisation, or our third-party service providers, who require such access to carry out the purposes described in this Privacy Policy, or otherwise permitted or required by applicable law.

Even though we have taken steps to help protect the Personal Data in our control, you should know that we cannot fully eliminate security risks associated with personal information. No security measures can provide absolute protection. We cannot ensure or warrant the security of any information you provide to us.

7. How Long we Keep Personal Data

We will not retain your Personal Data for longer than necessary for the purposes set out in this Policy. Following this, the Personal Data will be destroyed or rendered anonymous. Different retention periods apply for different types of Personal Data in line with our internal policies and procedures.

8. We may Transfer Personal Data to Other Countries

Personal Data that we collect may be stored and processed in EU/EEA or any other country in which we or our service providers maintain facilities, including in the United Kingdom, Switzerland, the United States and India. For such transfers outside the EU/EEA or your country of residence, we use contractual and/or other means, which include technical and organisational measures, to provide a comparable level of protection while the information is being processed by a third-party service provider or other entity in the destination country.

Personal Data processed and stored in another country may be subject to disclosure or access requests by the governments, courts or law enforcement or regulatory agencies in that country according to its laws.

By using our Services or by providing us with personal data, you consent to any such transfer of data outside of the EU/EEA or your country of residence. If you have any questions about our use of service providers outside of the EU/EEA or your country of residence, you may contact us using the information below.

9. Links to other Websites

Our Site and Services may contain links to other websites that may interest you. However, once you have used these links to leave our Site or Services, you should note that we do not have any control over that other website. We cannot be responsible for the protection and privacy of any information which you provide when visiting such sites, and such sites are not governed by this Privacy Policy. You should exercise caution and look at the privacy statement applicable to any website you visit.

10. Your Choices

You may choose to restrict the collection or use of your Personal Data in the following ways:

You may write to or email us using the contact information below to withdraw your consent to us using your personal data. For example, you can ask to be removed from our mailing list, or you can ask we remove your story from the Site if you have posted it. If someone has posted it to another site however, that is beyond our control.
If you receive email from us, you can also unsubscribe using the unsubscribe tool we provide in such messages. Alternatively, you can submit your unsubscribe request via email to our privacy office at privacy@argenx.com.
Subject to applicable data protection laws, you may request information about our collection, use, disclosure or storage of personal data.

11. Exercise your Privacy rights

Under applicable laws and subject to any legal restrictions, you may have the right to access your Personal Data, to correct inaccurate and/or complete your Personal Data as well as object or restrict any data processing thereof. You also have the right to revoke your consent at any given time without having to provide any reason. All data protection related requests should be addressed to the argenx Privacy Office at privacy@argenx.com.

If we do not handle your request in a timely manner, or if you are not satisfied with our response to any exercise of these rights, you are entitled to lodge a complaint with the competent supervisory authority of your place of residence; for EU/EEA residents, please visit the list of the competent EU data protection authorities and relevant contact details. UK residents may submit a complaint to the Information Commissioner’s Office (ICO). Swiss residents may submit a complaint to the Federal Data Protection and Information Commissioner (FDPIC).

12. Children

We do not intend to collect personal data from children. If you are under 18 years of age, please do not provide us with any information.

13. Contact Us

If you have any questions regarding this Privacy Policy, any Personal Data you have submitted to us, or if you would like to:

access Personal Data that you have already provided to us so that you can correct or update it; or
to submit a complaint,

Please advise us by contacting our Privacy Office by email at privacy@argenx.com.